We need to talk about ethics in care

“The word ethics,” said Ann Gallagher, “stems from the Greek ethikos, which originally meant ‘custom’ or ‘habit’.” She was speaking at the launch of a new project at the University of Surrey, which has the (literally) cool name, or rather acronym, ICE. ICE, she explained, stands for the “International Care Ethics Observatory” and the best way of illustrating it was with an iceberg. That, she explained, was because the big, important stuff was what you didn’t necessarily see.

We all understand the word “habit”. Some of us, for example, feel a coffee is never quite complete without a nice little cake, and a glass of wine just isn’t the same without a bowl of Kettle chips. Habit’s what gets us up in the morning, and in the shower, and brushing our teeth. But “ethics” isn’t a word we use quite so much. “Ethics” is a word you might use about expensive cotton T-shirts, or perhaps about a bank where things have gone wrong. “Ethics”, in fact, is usually something other people don’t have.

But ethics, Dr Gallagher explained, are what we need to lead a “good” or “moral” life. And as Reader in Nursing Ethics at Surrey, she should know. You can’t, she explained, look after people well if you don’t give any thought to ethics, and you can’t think about ethics if you don’t have a clue what they are. There are, she said, three main “sub-fields”. The first, called “descriptive ethics”, or sometimes “empirical ethics”, uses ideas from philosophy and social science. The second, called “metaethics”, involves language, methods of reasoning and concepts. The third, called “normative ethics”, is about setting the rules which create the norms.

We need to ask, she said, what care is for. Is it about reducing risk? Is it about helping people eat and drink and stay clean? Or is it about something much bigger? Is it, perhaps, about helping people live the best lives they can?

The ICE project, she said, would try to find the best examples of the best care. It would aim to throw light on some of the “dark corners” we might prefer to ignore. But it would need to challenge the view that giving good care can be done fast, and on the cheap. Care, she said, quoting the political scientist Joan Tronto, “is not a parochial concern of women, a type of secondary moral question, or the work of the least well off”.

It was clear from the audience in the room that care wasn’t “a parochial concern of women” because quite a few of the people in it were men. The next speaker, in fact, was a man. Dagfinn Naden might sound like the name of a detective in a gripping TV Scandi-drama, but he’s actually a Professor at a university in Oslo. He wanted to talk to us about a study he’d done in dignity. In Norway, in 2010, he explained, the Government had given a “Dignity Guarantee”. This sounded very much like waving a magic wand. “Let there be dignity!” said someone in the government, perhaps in the way Miss World applicants used to talk about world peace. The trouble is that even in Scandinavia, saying you’d like something to happen isn’t actually the same as making sure it does.

The main theme of his study, which took place in six nursing homes in Scandinavia, was, he said, “the feeling of being abandoned”. Residents, he said, often felt physically and psychologically humiliated. They also often felt they no longer belonged. “No one said hello to her,” said the relative of one, when she took her back to the place that was now meant to be her home. “Nights are like nightmares,” said another. “Residents say there’s no point in calling for help at night. Health personnel don’t come.” People in wheelchairs talked about having to eat off plastic tables, clipped to the chairs, that were too low. Some residents talked about healthcare workers “shovelling” food into residents’ mouths while they chatted on their mobile phones. Others talked about being put to bed at five o’clock. “She doesn’t,” said one relative, “even get to decide her own circadian rhythms”.

People who were being looked after in care homes, said Professor Naden, often felt they lost their dignity, and their freedom. This, he thought, could be seen as a “wrongful abuse of power”. Did he, asked someone in the audience, think the “dignity guarantee” was helping? Professor Naden paused. “I’m not sure,” he said, in the same calm way Sven Goran Erricson used to discuss England’s football disasters. “I can’t,” he said cautiously, “say it doesn’t help.”

Professor Katamusa Ota thought it was important to be able to measure such things. He had, he explained, been trying to develop “a valid and reliable dignity scale”. He wanted to find out what patients expected from nursing care, and what they actually got. He showed us a slide of a questionnaire. Quite a lot of it was in Japanese. To help those of us who only did French O level, and can’t really remember that, he handed out a summary, in English. The survey included statements like “physicians/nurses maintain eye contact with me while talking” and “physicians/nurses are polite to my family as well as to me”. It also included the statement that “physicians/nurses treat and care for me as a living human being rather than an object”. You might have thought doctors and nurses would have grasped the fact that patients aren’t objects, but perhaps, in a survey, you shouldn’t assume.

The results were collated, in a chart, in yellow, blue, green, red and grey bars. They showed, said Professor Ota, that, when it came to autonomy, older people were more satisfied than young people, and men were more satisfied than women. They also showed, he said, that British patients – or at least patients in the hospital in South East London where the survey was conducted – were less satisfied than patients in Singapore.

I don’t know what you’d have had for lunch in Singapore, but we had a nice buffet. It was just as well, because in the next session you had to really use your brain. “Does Les Belshaw still exist?” said Chris Belshaw, a philosopher from the Open University, after showing us a photo of his dad in middle age, and a photo of him, with dementia, now. “Is he,” he asked, “the same person? If he’s a different person, who is he? And if he doesn’t still exist, when did he cease to?”. We could, he said, either “do the metaphysics and then the ethics” or we could “find a way through the mess”.

What followed didn’t feel like a mess. It felt like a mental marathon. “A person,” he said, quoting the philosopher John Locke, “is a thinking, intelligent being that has reason and reflection… There are people,” he continued, “who are ordinary human beings, and there are persons, these complex psychologies”. Is a person, he asked, a thing, like an atom, or a phase, like a teenager? An organism, he said, begins with conception and ends with death. A person, he suggested, “begins gradually in infancy” and may end in death, but may also be replaced, in an organism, by a different person. Do we, he asked, give names to “persons” or “organisms”? Should we, for example, say “Jack is no longer here?”

Judging by the expressions of horror around the room, we shouldn’t. Should you, asked somebody near the front of the lecture hall, no longer treat someone as a person when they’re under anaesthetic? Wasn’t it, asked someone else, a slippery slope? If you didn’t think someone was still the person they had always been, then where would you stop? Dr Belshaw listened patiently to the comments. Perhaps, he said calmly, the “phase view”, of a “person” being like a teenager, was “to be preferred”.

The rest of the day was less controversial. Anna Cox, Senior Research Fellow for ICE, talked about the work she was planning to do to make an “end of life tool kit”, and to measure empathy and “promote ethics” in social care. Kathy Curtis, Senior Tutor in Clinical Bioscience at Surrey, talked about the conversation she’d had with a nursing student who was married to a chef. “I want you,” she said, quoting the student, “to imagine nursing like making a soufflé. You can be given some eggs, flour and sugar, but you’re not going to make a great soufflé unless you want to make it. You have to have the time to complete each stage. You’ve got the soufflé dish, the oven and the courage to take it out of the oven at just the right moment. You can share the pleasure of that soufflé with other people. You can also recover your emotional state when the soufflé sinks.”

Martha Wrigley, Clinical Trials Manager at Ashford and St Peter’s NHS trust, talked about dogs. Dogs, she said, could help children with autism, people with disabilities and people who had seizures and fits. Dogs, she explained, can take people’s shoes and socks off. They can even help people have showers. She showed us slides of a dog called Dougal and a woman called Lynn. Dougal, said Lynn, could tell her when she was about to have a fit. He had, she said, “transformed” her life.

“No one,” said Jane Leng, Senior Tutor in Nursing Care at Surrey, “goes to work to do a bad job. How,” she asked, “can you use stories to foster empathy? The process of storytelling,” she added, “requires the storyteller to reconstruct events and find meaning.” She had, she explained, been using “digital stories” to look at “values-based recruitment”. Then she showed us one. It was called “Untouchable” and it was told in the voice of a woman who had been made to feel unlovable, and unloved.

“The challenge,” said David Stanley, inaugural Chair of the Social Care Research Ethics Committee, “is to do research that makes a difference, because there’s an awful lot out there.” There are, he said more people employed in adult social care than in the NHS. “We need,” he said, “to get better at unraveling what we mean by good care and bad care. Morals,” he said, “are ‘little manners’. You can judge people’s morality by how they behave.”

Yes, you can. It isn’t the thought that counts, it’s what you do. But it’s also how much you value what you do. “For workers in this sector,” said Ken Akers, the HR Relationship Manager for adult social care in Surrey, “ ‘I’m only a carer’ is too common a refrain. Good caring takes time. Local authorities must start to commission for outcomes, and not by the minute. We want,” he said, “to get the right people with the right values.”

It was, it was clear, by the end of this very interesting day, all about the “right people” and the “right values”. It was also about getting away from the quick fix. “We live,” said David Perry, Chair of the Ethox Foundation which is funding the ICE project, “in a world of quick diagnoses for what’s gone wrong. Investing in careful, thoughtful, long-term research is probably the best way to go.”

Good care takes time. So does good research. And so, of course, do good souffles. As a “journalist in residence” on the project, and one who’s used to having to produce a column on the big issue in the news in a few hours, I’m looking forward to seeing what can happen when you’re given a bit of time. And as someone who has campaigned to raise standards in nursing, I’m looking forward to seeing what we learn. “One person,” said David Stanley, quoting JFK, “can make a difference. Everyone,” he added, should try.”

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Christina Patterson is a writer and broadcaster. A former columnist at The Independent and Director of the Poetry Society, she now writes for The Sunday Times and The Guardian about society, culture, politics, books and the arts.